Some of you know that my involvement with ependymoma is very personal and dates back to July 2002, almost 12 years ago, when my father was diagnosed with anaplastic ependymoma. While the journey was not easy, the outcome was victorious. However, I know firsthand that this is not an outcome shared by many of you. Over the past seven years that the CERN Foundation has been in existence, we have communicated directly with over 700 of you seeking answers to specific questions about ependymoma or referral information for second opinions and clinical trials. It has been a privilege meeting all of you, even during this extremely difficult time in your life. Suddenly, this rare disease doesn’t seem so rare at all and it becomes very personal, not just statistics on paper. Therefore, today as I stand here in front of you all, I no longer represent my own story but I represent all of your stories. My voice no longer sounds for my own family but echoes for all of yours.

You see, aside from the medical professionals, none of us wanted an invitation into this community. No matter if we tried to hide from it or tackle it face to face, we inevitably were forced to deal with the issues at hand, not because we have the strength to but because we have no other choice. Our community is extremely diverse and we come from all over the world. If someone were to ask what is ependymoma, I would reply in the following way: Ependymoma is a rare type of primary brain or spinal cord tumor found in adults and children. If someone were to ask who the ependymoma community consists of I would reply in the following way:

We are the friends – who bring meals and groceries after surgery or chemotherapy treatment. We watch the other children and drive them to practices and appointments to keep their lives as normal as possible. We don’t always know what to say or what else we can do. We are connected to this experience and we cheer when good news is shared and we cry whole heartedly when we hear the bad.

We are the family members – who live on the other side of the world and are the only family members that understand English and therefore are desperately searching the internet for information to provide direction and someone to help us. We take care of our loved ones and grieve the loss of our normal life. We offer prayers and hopeful thoughts as sometimes this is all we can do.

We are the complete strangers – who heard a story about a little boy with ependymoma and were so moved we started a bake sale to raise money for research. We pay attention to the icons we see on social media describing ependymoma awareness day and want to help in some way because we know it could have just as easily been us in that position.

We are the medical professionals – who chose oncology because when we were in medical school we were moved by a family member who had cancer. We thrive in environments of scientific excellence and constantly challenge each other. We don’t have a job that is for the lighthearted. We are tenacious, we are competitive, we are understanding.

We are the survivors – who put one foot in front of the other even on the most challenging days. We have to do things we don’t like to do like spend time in hospitals away from our families, endure the dreaded scan anxiety, and take treatments that make us feel different. We have to learn to live with deficits that are hard and unfair to cope with. We have a zest for life because we take nothing for granted but sometimes we struggle with how we got to be the lucky ones.

We are the parents – whose worst nightmare is a nauseating reality. We go through challenges so dark and difficult we didn’t even know they could exist on earth. At night we lay awake wrestling with critical medical decisions, feeling overwhelmed with work and family obligations, and we worry how things will turn out. We rejoice with every precious moment we spend with our child knowing that no moment is ever long enough, no matter the outcome. We are searching, we are compassionate, we are forever changed, and we will never stop.

We are the angels – who fill the sky. Our days on this earth were far too short. Many of us spent more time being sick and in and out of hospitals than we did living a healthy life. We never got to run around with friends or catch lightening bugs like all children should be able to do. We never had the chance to grow old and hold our grandchildren. Although nothing about our illness was fair, we loved so many people and were so deeply loved by even more.

Together, we all play an important role in any success made in the scientific field. Together, we educate the world on the impact this disease has and the need for different outcomes in the future. Through the tragedy and pain of the journey, the voice of the ependymoma community remains brave and humble. Although many of us cannot fight forever, we live the time that we have thoughtfully and very aware of the uniting power ependymoma has in our lives. No progress will ever come quick enough, but persistence is the key to a different kind of future for all of us. From the depths of my heart, thank you all for any type of connection or support you have given to the CERN Foundation and let us cling on to any hope that we find along the way.

Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates.

This form needs Javascript to display, which your browser doesn't support. Sign up here instead